A desperate Nashville couple pursues an expensive — and illegal — stem cell treatment in Tijuana
The High Cost of Hope
by Brantley Hargrove
Dawn Gusty has the wide, toothy grin of a terminal optimist. At the moment, though, swallowed up in a plush brown leather chair 1,740 miles from home, she wasn't smiling. Her legs were skinnier than they'd ever been, and far more atrophied. Her tibias looked like rails pushing through her shins.
Still, Dawn couldn't help but daydream about all the things she would do again. Like letting the red electric scooter — her primary method of conveyance these days — gather dust in a closet. Like breaking out the old cane she had so meticulously painted in the early days of her disease, when she could still get around on her own two feet. The source of all her suffering, multiple sclerosis, is a complex and so far incurable ailment with a maddening lack of scientific understanding. Dawn's wish, by contrast, was simple.
"My goal is to use my cane and walk my kid into kindergarten," she said.
Dawn's is a particularly aggressive form of MS. It is characterized by a runaway immune -system response that causes nerve damage and, in the progressive stage, a rapid decline in mobility as the nerves that conduct signals from her brain to the rest of her body degenerate. Her doctors tell her the life she has now — constant pain, agonizing difficulty of movement — is as good as it's going to get. The treatments currently available in the United States don't work on someone as far along in the disease process as Dawn.
So the former Sony-BMG sales rep decided to leave the U.S. for Mexico, where she could buy a commodity in short supply back home: hope.
She paid dearly for it, too. By Googling "stem cells," she found an intermediary who would set her up for a controversial treatment that is currently outlawed in the U.S. The intermediary — a company called Stem Cells for Hope — charged Dawn Gusty $27,000. In return, she hopped a plane to San Diego with her husband John, her two boys and her parents. Upon landing, the Gustys took a Ford Econoline van across the Mexican border into Tijuana — a historically friendly destination for medical tourists.
The treatment would be an infusion of her own bone marrow — known to contain stem cells — into her spine, her veins and her muscle tissue. The idea behind the therapy is that an infusion of stem cells could regenerate the damaged nerve tissue in her brain and spinal cord. Repair the nerve tissue, the thinking goes, and maybe Dawn walks with her cane again.
The Food and Drug Administration decided to regulate this kind of bone marrow transfusion as a drug, or more specifically, as a biologic — a product of your body manipulated by the hands of men just enough to merit regulation and a double-blind clinical trial before it can legally see application in clinics and hospitals. Or at least that's the rationale.
Nevertheless, Dawn is but one patient in a medical exodus. Each year, thousands of Americans stream to far-flung clinics offering stem-cell-based therapies in Mexico, China, Indonesia, the Dominican Republic, Ukraine and Germany. The Stem Cell Research Forum of India expects the value of the stem cell market in that country alone to be $540 million this year.
It's nearly impossible to know how many such clinics operate in Tijuana, let alone the rest of the world. Their protocols, like the conditions they claim to treat, can be as various as they are difficult to verify — if the clinics will talk at all.
A large contingent in the research and medical community argues that stem cell clinics like this one are ruthless scavengers that prey on the desperation of patients for whom modern medicine has no ready answer. The U.S. medical establishment regards them as quacks who prowl the hinterland between theoretical promise and proven therapies, where hope, as they say, springs eternal, but well-founded doubt remains.
Proponents, however, argue the opposite: that Big Pharma and profit-driven research facilities stifle progress to protect their own products — and their own bottom line — while maverick physicians outside the mainstream are pursuing bold new treatments. Are broad, double-blinded clinical trials the only path to the development of safe and effective treatments, as much of the scientific community asserts? Or do clinics like these represent the kind of small-scale innovators that brought us in vitro fertilization, laparoscopic surgery and thousands of other surgical innovations, both good and bad?
The problem is, at the moment, there's no way to distinguish the innovators from the hucksters who populate any Google search, promising high-dollar miracles they can't deliver. And here sat Dawn Gusty, hearing for the first time there might be an answer to her plight — a way to halt the slow wasting of her body, and perhaps to make her walk again.
An estimated 400,000 people have MS in the United States — 2 million across the globe. According to the National Institutes of Health, 200 cases are diagnosed each week, at a cost to the nation estimated in the billions of dollars. Grave questions remain about how close we are to treating MS with stem cells. But that's not what Dawn Gusty was hearing. Her primary treating physician here, Dr. Gustavo Andrade, told her on the first day that he'd seen stem cell "miracles."
"We believe in God, and I have the faith," Dawn replied. "And I expect a miracle."
In pursuit of that miracle, the Gustys would hand over a large chunk of money. And a woman who requires a Herculean effort to lift her Crocs just one inch off the ground would load her walker and scooter onto a plane and travel to another country. Along with their money and most desperate wishes, Dawn and her family would place their greatest remaining asset — their faith — in a company about which little is known, a clinic in a troubling south-of-the-border industry of medical tourism, and a treatment many physicians regard as unproven at best.
Accompanied by a Scene reporter, the Gustys went to Tijuana, like so many others in similarly desperate circumstances, with something precious at risk: their last hope. Their experience confronts some of the bleakest questions facing patients who have exhausted conventional medicine, and who are vulnerable — infuriatingly, heartbreakingly vulnerable — to any promise of relief. No one can blame them for wanting what doctors back home tell them they more than likely will never have: the life they once knew.
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